The Atypical HUS Foundation

Soliris (65)

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Soliris

Currently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum! Many members of this website ha…

Started by Linda BurkeLatest Reply

Discussions Replies Latest Activity

Cellcept to Eliminate Factor H...

My two year old daughter was diagnosed in May with aHUS. She responded beautifully to Soliris and continues to do well. Her doctor has sugg…

Started by Erin Schooley

2 Jul 14, 2017
Reply by Erin Schooley

LINDA BURKE ENGAGES THE aHUS PATIENT WORLD

One day several years ago, Linda Burke learned about a disease called aHUS. Her son was ill and that was the diagnosis she was told. Her re…

Started by Len Woodward

0 Nov 9, 2016

Atypical HUS and illness

Hi  I wonder if anyone can help me. My 5 year old daughter has been diagnosed with atypical hus inJanuary. It was a disease that we know no…

Started by Becki Cheadle

1 Oct 14, 2016
Reply by Linda Burke

Soliris and excruciating leg pain

Hello everyone , this is my first time posting and I'm looking for some answers, suggestions or maybe just comfort. I want to start off by…

Started by Cristian Arias

0 Sep 27, 2016

Low Hemoglobin

My husband is on Soliris since May of 2016.  His kidney function has improved enough to get off dialysis, however he has noticed he has slo…

Started by Betsy Pennington

4 Sep 5, 2016
Reply by Betsy Pennington

Soliris: Stop or Continue?

My sister has been on Soliris for several months and has shone marked improvement. A month ago she suffered a seizure that resulted in a ho…

Started by Rebecca Redshaw

2 Apr 11, 2016
Reply by Rebecca Redshaw

aHUS and eculizumab

  http://sidharthsethi.blogspot.com/2016/04/eculizumab-for-ahus-first-use-in-india.html This article was written about our son, Jacob. We…

Started by Samantha Blaszynski

6 Apr 11, 2016
Reply by Len Woodward

EMPOWERING THE USA REGIONS

It is a hard job to run a patient organisation. There are so many things that a patient organisation has  to do. In a long forgotten forum…

Started by Len Woodward

0 Mar 4, 2016

FH auto antibodies

Ethan's genetic testing was clarified in Iowa that he has the FH auto antibodies instead of the FH mutation we thought he had. Dr. Nester t…

Started by Anne Bruns

5 Dec 6, 2015
Reply by Anne Bruns

Cellcept

Has anyone used Cellcept in conjunction with Soliris? My sons nephrologist wants to put him on Cellcept in hopes of lowering his factor H a…

Started by Stephanie Boulay

0 Nov 15, 2015

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